Saturday, August 30, 2014

Delayed Intensification

Lilly started a new phase of treatment. It's called Delayed Intensification. We are on day 9 of 29, then she has to make counts again, and then we start the second half of the phase which is another 29 days. So far it's lived up to it's name - it's intense. But, Lilly is doing the best she can and that's all she can do. Some days are a lot harder than others, but she's a tough girl.

The phase started last week with a spinal tap. She gets chemo in her spine to make sure there are no leukemia cells hiding in her spinal fluid. She has gotten used to going to the RTU and isn't nearly as nervous as she used to be. Especially because either mom or dad can go back to the procedure room with her while she falls asleep.

She usually ALWAYS picks mom... 99.99% of the time. But, this last time she chose dad. She was kinda scared, but she knew that it would make him feel special! She's such a sweet girl!

It had been a while since we had seen Dr. Doug - aka Prince Eric! Lilly loves him more than any other doctor. She lights up when she gets to see him and he is so cute with her and loves her right back! Lilly and Doug have a bond like no other. In one of the pictures he is showing her a text from his wife. He had been texting her about Lilly... So sweet!

Lilly is going to lose her hair again during this phase... :( She remembers how Michalla dyed her hair before she shaved her head, so she wanted to do the same thing. Lilly's hair is still pretty short so we just use chalk instead. She got a lot of compliments on her purple hair!!

 Staying happy is the best way to get through these hard times. Lilly has to get the dreaded Erwenia shots because she's allergic to PEG, which most kiddos get. She has to get a chemo shot in her upper thigh every other day for 6 days. It's no fun! 

Lilly gets scared, but she gets through it. We know what helps calm Lilly down... Tell her to focus on her breathing and rub her feet. The first day she got the Erwenia shot, she was extra nervous... She had grown since her last set of shots and so the dose increased a tiny bit. They put the chemo in 2 different syringes instead of 1! But, the dose only changed from 2.0ml to 2.1ml!! It's ridiculous that they didn't just put an extra 0.1ml in one syringe. So, she had to have 2 shots the first day, but then we got it approved by Dr. Doug to put it in only 1 syringe for the next 5 shots. Hallelujah! When two nurses came with two syringes, Lilly started panicking and almost hyperventilating. It's so hard to watch her do such hard things... But, as soon as they started giving the shots she was so calm, didn't move a muscle, and didn't make a peep! After it was over she was laughing/crying and kept saying "I did it!" She was so happy! Later after she had calmed down, she told me the whole time she was getting her shots she kept thinking about Michalla! That made my heart so full! To know that Michalla is still helping Lilly fight this battle in heaven... I'm so grateful for Michalla and the friendship her and Lilly have. We miss her every day, but we are grateful she is one of Lilly's angels.

Cute Bre. Lilly had her for a nurse when she was first diagnosed, so it's fun to see her over in clinic now too.

Even though Lilly started back up on steroids, she didn't have much of an appetite until about day 5 of 7. On our way home from the hospital we made a detour to Pei Wei's to get her some honey seared chicken. She ate all but ONE piece! It was so nice to see her eat. 

These two miss each other so much when we go to the hospital. 
Sisters are the BEST!

More of our favorite nurses... Becky and Aubri. Lilly thought it was fun to have orange hair for the day and that she matched Aubri's hair. :) We are so grateful for the awesome nurses at Primary Children's Hospital. They are so great and make the hard things Lilly has to go through, a little more bearable.

During all of this, Lilly was also supposed to start 1st Grade. It was a bittersweet day for me as well as for Lilly. It was hard for her to see her friends get to go to school and still be left behind. But, we are getting closer to when she can go back again. Which makes me nervous, because of all the germs that come along with school. But, we will cross that bridge when we get there. Lilly got up early on the "first day of school". We bought her a new school outfit just so she could still feel like it was a special day.

She wanted to go outside and wave to the bus as it drove by. The bus driver actually stopped in front of our house to pick her up, but we had to tell her that she would not be going... :( We are trying to get approved from the school district again to have her teacher come to our house once a week, but it'll probably take a while to get that going. For now, we are doing our own "school" at home.

We can do hard things. Being happy is the best kind of medicine. We take life a day at a time. We can only do our best. Lilly is the bravest girl I know! I love her so much and I'm so glad I get to be her Mom!

Thursday, August 21, 2014

Ice Bucket Challenge

Yesterday Felix Falcon asked Lilly to help him do the Ice Bucket Challenge.  Lilly was super excited to go. We could tell Felix was just thrilled to to have some of his favorite kiddos there to help him get wet.  It was a lot of fun watching the kids drench him in ICE COLD WATER.


  To our surprise and Felix other mascots came to join in the fun.  They didn't think Felix was quite wet enough so, they threw him into the pool.


Felix had quite the audience

Lilly was excited to met new friends like Willy, Little Willy, Rocky, and T-Bone.

In Felix's Challenge he challenged anyone to do the same.  I was also nominated by Megan Mills to participate in the cause.

I nominated Steve Reid, Lori Johnson, Ken Zabriskie, Brady Flamm, & Jake Metcalf to the Ice Bucket Challenge.

Lilly and Emery wanted to join in the fun. Lilly forgot to call out her nomination, so we'll do it here. Lilly nominated JT Bird to the Ice Bucket Challenge.

Tuesday, August 19, 2014

Horses & Fairies & Birds, Oh My!!

Lilly has had a little break to recover from her last round of high-dose chemo. We are trying to do as many fun things as we can before she starts the next phase of treatment. We had a really fun weekend... We went up to Oakley and Lilly got to ride horses! She had the time of her life!

Kenzi had been following Lilly's blog and had sent me a message via Facebook just over a week ago, asking if there was anything she could do for Lilly. I was very touched that she would want to help brighten Lilly's day. I told her she loves to get mail and she would LOVE to ride her horses if she was ever in town. (She's going to college in Arizona) 

It worked out perfectly because she was coming into town over the weekend, so we set up a time to come visit. :) Kenzi and Lilly became fast friends! Lilly talked her ear off the entire time she was riding Buckwheat! I'm sure they had plenty to talk about... Kenzi is going to PA school and is considering going into pediatric oncology. I am so excited for her! 
She will be AWESOME!

Lilly rode Bucky for over an hour! When she finally got off him, she said her legs felt funny!

These two have decided to become pen pals. Lilly already received her first letter from Kenzi when we were visiting on Saturday, and Lilly is already writing her back. I think this will be so so good for Lilly. It's just what she needs right now.

Emery was so nervous around the horses. There was NO WAY she was going to get close to the horses, let alone ride one. But she still had a fun day from far away! :)

Bucky is an old horse. 34 years old! Perfect for a little six year old girl to ride to her heart's content. :)

I am so grateful for Kenzi and that she felt inspired to reach out to Lilly. I know Lilly and Kenzi will be friends for a long long time!

The following day on Sunday, we went up to the Fairy Forest. Have you ever heard of it? Me neither until a couple of months ago. It's up Samak and you'd miss it if you didn't know what you are looking for. It's at mile marker 17. There's a little pull-off area to park your car and you follow the trail, through a camp ground, across the river bottoms, and over a fallen log...

 It was fun exploring through the forest, looking at all the different fairy houses.

There was a fairy saloon, a fairy fire station, and many fairy houses... Lilly has decided there needs to be a fairy hospital for sick little fairies. That is our next project we are going to work on! Hopefully we can get it finished and up there before it snows! 

Fun Day!

On our way home, Emery was NOT ready to be in her car seat and she threw a FIT! So, we stopped at a friend's house and visited for a while to get all the wiggles out.

I have never seen so many hummingbirds before in my life! Jen Gostick has two of these hummingbird feeders and she has to refill them once a day! Crazy! Afterwards, the ride home was much more pleasant... It was a fun fun weekend and I'm so grateful for the adventures we had!

Tuesday, August 5, 2014

High-Dose Methotrexate -- DONE!

Lilly just finished her 4th and last round of high-dose methotrexate and I am SO GLAD! Each time she gets a fever after she clears her methotrexate, and each time it gets worse and worse. We are happy to get this phase out of the way!

The first few days are fine. She feels good and is happy! Mitch was our nurse the first day and Lilly had lots of fun with him. Fun nurses are the best! I love to watch the nurses interact with Lilly. They come in and almost always comment on her cute leggings and Lilly immediately starts talking about her best friend Michalla. Lilly started wearing leggings because of Michalla. Lilly tells them that Michalla helped her when she was sad about losing her hair and that Michalla always painted her nails. Then Lilly proceeds to tell them that Michalla is in heaven now, but that she's still watching over her. Almost all of our nurses have been touched by Michalla in some way. She is an amazing girl and I'm so glad our family had the privilege of knowing her. She is our angel now and not a day goes by that Lilly doesn't talk about her. We love you Michalla! Thank you for watching over our Lilly!

We try and stay busy any way we can. 
Puzzles, nail painting, movies, whatever.

Lilly and Grady (another cancer kiddo) were diagnosed with Leukemia one day apart. And we also found out they have the same pediatrician. Small world! They had fun hanging out. Grady even let Lilly paint his nails a "manly" green color. And they created a band together when Music Therapy came. Fun times! It's also nice to have a cancer mom to hang with too. Carrie is so fun and I was glad she was our neighbor for a few days - it's nice for mom's to have friends while in the hospital too! :)

Grady's sisters - Parker and Maizy   
Lilly couldn't wait until they came each day to the hospital to visit, because that meant more friends to play with!

We LOVE Susan the Art Lady! She comes and hangs out with us and shows us some pretty cool crafts. This time Lilly and her spray-painted pillowcases, made stickers, and made some special necklaces. She is so great!

Like I said, we have fun the first three and a half days. It's like the chemo isn't even bothering her...

And then the fevers start... Her fever got up to 104.8. They gave her Tylenol and started her on two different antibiotics - Cefepime and Vancomycin. She had a reaction to the Vancomycin called Red Man's Syndrome. It's hard to tell in this picture, but she's as red as an Indian. Her head burned and itched like crazy and her fever wouldn't break even though they gave her Tylenol. She had a constant fever for over 8 hours. She was miserable. They wanted to give her another dose of the Vancomycin, but just slow down the flow and give it to her over two hours instead of 30 minutes. I didn't feel good about it. My "mom instincts" told me she needed something else. So, I protested. I asked if there was another antibiotic they could give her instead. I felt very strongly that the antibiotic she was reacting to was also preventing her fever from going down. The nurse told me they had to give her an antibiotic because her fever was so high and they were worried about a possible infection. I told her that was fine, as long as it was a something different. They got it approved to change medications and as soon as she got the new antibiotic, her fever began to slowly come down. It spiked a few times over the next 24 hours, but it never got that worse again. Lilly was afraid she was going to have another horrible night, so she asked to stay one more night. You know your cancer kiddo doesn't feel good when they ask to stay in the hospital when they are normally counting down the minutes until they can get out of there. We had no more complications and were able to come home yesterday. But, Lilly has a lot of recovering to do. Her ANC went from 1700 to 200 in less than 48 hours because of that awful high fever. We have to be very careful about germs and hope she doesn't get another fever anytime soon, or we have to go back to the hospital. But, we are grateful we have another phase done and out of the way. Lilly is so brave and she is kicking cancer's butt! We just have to take it a day at a time and we are grateful for all the love and prayers that continue to come our way.